Feature Article

Whose life is it anyway?

Parents are now able to create and select embryos so that a new child is born to help save the life of their existing offspring. But should it be their right to decide that a baby should bear such an onerous burden?

TWO-YEAR-OLD Joshua Fletcher, who suffers from a rare blood disorder called diamond blackfan anaemia, is only alive because of the painful and lengthy injections he is given every day. The toddler will die ? after a short life of gruelling treatments ? if he is not given a bone marrow transplant, because no one in his family has the right tissue type to make them a life-saving donor. His parents were desperate ? until last week, when Britain?s fertility watchdog, the Human Fertilisation and Embryology Authority (HFEA), ruled that couples like the Fletchers could conceive a baby in order to save the life of a seriously ill child. Now there is a strong chance that Joshua will live.

When the HFEA announced that it was relaxing the laws governing embryo screening and selection, it was clear that its 18 members were heavily influenced by the predicament of children such as Joshua. In ruling that parents would be able to test embryos for a particular tissue type that would allow the harvesting of stem cells ? master cells that can develop into specialised cells and be used to treat a range of illnesses ? and the implanting of an embryo if it matched the elder, ill sibling?s tissue type, the HFEA was overwriting its ruling of 2001. This stated that that embryo screening ? pre-implantation genetic diagnosis (PGD) ? could only be used to test for serious genetic conditions such as cystic fibrosis.

This approach was soon shown to be inconsistent. While one couple, Raj and Shahana Hashmi, were allowed to use PGD to help their son Zain, who has the blood condition beta thalassaemia, because they wanted to test embryos for both tissue type and the presence of the disease, the HFEA rejected a similar application from Jayson and Michelle Whitaker, who wanted tissue typing tests alone because there is no PGD test for their son Charlie?s condition, diamond blackfan anaemia. The desperation and grief of the Whitakers and Fletchers ? like that of the Hashmis before them when they were lobbying the HFEA ? was given widespread media coverage, and will certainly have played an important role in the HFEA?s decision.

The children who will be created as a result of the new policy will have umbilical cord blood taken from them ? for its stem cells ? at birth. If this is unsuccessful ? there may, for example, be insufficient quantities of cord blood ? the ill child?s doctors may then apply to the family courts for a bone marrow transplant; these are ruled upon by the courts because they are more invasive to the donor. The HFEA has no jurisdiction over either procedure.

Announcing the new policy, Suzi Leather, the HFEA?s chairwoman, begins her explanation of the thinking behind the ruling tellingly. ?Faced with potential requests from parents who want to save a sick child, the emotional focus is understandably on the child who is ill,? she says. She then adds that, ?Our job is also to consider the welfare of the tissue matched child which will be born.? And so, in one step, the HFEA, which was established in 1991 to provide a set of safeguards for in vitro fertilisation (IVF) and to protect IVF babies, had widened its scope to cover the welfare of IVF children?s siblings too.

But more significantly, the HFEA?s announcement heralds a seismic shift in reproductive medicine, sanctioning, as it does, the specific creation of one human being for the purposes of another?s health. This is the first time such a practice has been officially approved anywhere in the world: although it does take place, unregulated, in the United States and Canada, in many European countries, which have a less permissive IVF and stem cell framework than Britain, such a practice would constitute a criminal offence.

In the view of many people, the HFEA has overstepped a fundamental moral boundary here. Archbishop Peter Smith of Cardiff, who is chairman of the English and Welsh bishops? department of Christian responsibility and citizenship, echoes not only Catholic teaching but one of the basic humanitarian principles set out by Immanuel Kant when he notes that the change in regulations ?abandons the foundational moral principle that human lives should never be used as a means to an end?. Archbishop Smith has been joined by pro-life campaigners and ethicists, who say the new ruling treats babies as mere commodities.

But the HFEA?s decision has been welcomed by many fertility experts, who see it as a compassionate move that irons out the inconsistencies of the policy set out in 2001. These specialists do not believe that there is a fundamental moral distinction to be drawn between PGD screening (screening so as to discard embryos with genetic abnormalities, which many pro-life campaigners also disagree with) and the procedure known as tissue typing (selecting a particular embryo because it is a match for someone who is sick).

?It has already been established that society accepts screening in general,? says Juliet Tizzard, the director of the Progress Education Trust, a charity that promotes research on genetics and reproduction. ?I do not believe there is a moral distinction between doing PGD and tissue typing and tissue typing alone.?

She adds that parents with sick children have already been known to conceive in the specific hope that their new baby would produce a tissue match for their ill child. ?Sometimes these parents have had a baby that they wouldn?t have chosen to have otherwise, but that doesn?t mean those babies are any less loved when they are born,? she says, adding: ?People have babies for all sorts of all purposes ? often for very peculiar reasons. Using technology doesn?t make it intrinsically worse.?

It is certainly true that there is nothing very new about the idea ? or indeed the practice ? of creating a child as a means to an end without a thought for the child?s welfare. But Richard Nicholson, who edits the Bulletin of Medical Ethics, believes, like many, that the use of technology does have a special significance here. ?This is different because it is using technology to specifically select a child, something that has not been done before,? he says. ?And anyway, two wrongs do not make a right.?

Nicholson describes the HFEA?s decision as ?importantly wrong because it is a real diminution of the basic respect with which human beings have been treated?. He adds: ?At least there is no pretence from the HFEA that there is an ethical or a moral judgement behind this; it is crudely utilitarian. The HFEA thinks it is more important to save the lives of a small number of babies than to stand by important moral principles.?

The creation of a child for another human being?s particular use may be abhorrent in principle, but it does not bear scrutiny in practice either, says Josephine Quintavalle, director of Comment on Reproductive Ethics (Core), a Catholic pro-life research group.

?Parents wishing to create a baby as a tissue match assume that their adult reproductive rights automatically give them total control over their children?s bodies,? she says. ?I cannot accept this premise. Slave owners believe they own the bodies of others, but we rightly campaign against such a notion. Neither you nor I can be forced to donate blood or bone marrow or any other tissue. Why should it be different for children?? Quintavalle feels particularly strongly that the necessity of the HFEA?s ruling has been overstated; the possibility of using cord blood banks, she believes, has not been sufficiently investigated.

Nicholson, too, likens the creation of babies in this way to the slave trade. ?People are calling these babies ?saviour siblings?,? he says. ?But I call them slave siblings.?

And what of the psychological damage to the child? While some fertility doctors have argued that such a child would feel a sense of altruistic purpose in its very creation ? ?there could be no better reason for having a child than to save the life of another child,? says John Harris, professor of bioethics at Manchester University ? many disagree.

?The psychological burden put on the designed child cannot be dismissed in a rose-coloured enthusiasm for the benefit of the third party,? says Quintavalle. ?What happens if the donation is not successful? Or if the donation itself causes the death of the recipient? It is often recorded that children feel an irrational responsibility for the death of their parents or sibling.? The HFEA says that it has ?carefully reviewed the medical, psychological and emotional implications for children and their families as well as the safety of the technique?, but, as Quintavalle points out, the experience of these children could scarcely be said to offer any comparison, since none of them was created specifically.

One of the most frequently quoted arguments against tissue typing appeals to the spectre of ?designer babies?. In a sense, the new decision has already ushered in the age of designer babies: children will now start being selected for particular attributes ? in this case their tissue type. Nicholson points out that just as the pro-life lobby looks down a slippery slope, it could quite as easily look up the slope ? past milestones such as the introduction of PGD.

It could be argued, adds Quintavalle, that the populist nightmare of designer babies created for their aesthetic or mental attributes is in many ways more desirable than the selection of embryos with the right tissue type. ?If I wanted a baby that was beautiful, intelligent and athletic that would at least benefit the child,? she says.

But Tizzard says that the fear of designer babies selected for such attributes is far-fetched and hysterical. ?It is not yet possible scientifically to select on the basis of intelligence and looks,? she says, ?and the HFEA?s ruling doesn?t make this any more likely.?

She does, however, accept that the ruling constitutes a slippery slope in the sense that the regulation will almost certainly be broadened in one area in future. The HFEA?s ruling limits tissue typing to siblings only, ?allowing embryos to be tested in order for families to have a child who could be a tissue match for a seriously ill brother or sister?.

For example, ?a mother could put forward a very compelling reason for needing the procedure for herself ? without it she would not be able to look after her children,? says Tizzard, adding: ?There seems to me to be no moral distinction there.?

I ask Leather why the HFEA has limited the procedure to siblings. ?The HFEA believed that it is only right to allow tissue typing for sick siblings because it would not be right to allow parents to create children for their own benefit,? she says. She adds that the policy could be reviewed to allow other members of the family to benefit from tissue typing but ?there would be need to be a very strong case to allow the use for others?.

It seems almost certain that such a ?strong case? will appear soon, and that the law will be relaxed further in this area.

Even those who support the HFEA?s ruling in principle are critical of the timing of it, and the fact that it has been decided by 18 people without any significant public consultation. Britain, unlike other European countries, does not have a national ethics committee, which means that public awareness of such issues is comparatively low. Ian Gibson, Labour chairman of the Commons science and technology select committee, believes the HFEA is making policy ?by the seat of its pants?.

It is impossible to say what effect this new ruling from the HFEA will have in the long term. But Bernard Hoose, a leading Christian ethicist at Heythrop College, London, warns that it is dangerous because ?the law changes attitudes?. Seeing how public opinion has swung behind abortion since 1967, he says that many doctors oppose the legalisation of euthanasia because they believe it would change the way people view the elderly and disabled. In the ethical minefield of embryo selection ? and the creation of human beings for the purposes of others ? he believes that proper public consultation and debate are needed urgently. ?We are running before we can walk,? he warns.

From test-tube baby to designer baby

1978 The first in vitro fertilisation (IVF) baby is born in 1978

1990 The Human Fertilisation and Embryology (HFE) Act is passed to govern IVF practices.

August 1991 The Human Fertilisation and Embryology Authority (HFEA) is set up as part of the HFE Act. Its principal tasks are to licence and monitor clinics that carry out IVF, donor insemination, human embryo research and to regulate the storage of gametes (eggs and sperm) and embryos.

December 2001 The HFEA announces its decision, in principle, to allow tissue typing to be used in conjunction with preimplantation genetic diagnosis (PGD) for serious genetic diseases.

22 February 2002 The HFEA grants a licence to Care at the Park hospital in Nottingham permitting PGD and tissue-typing as part of Raj and Shahana Hashmi?s IVF treatment. They were allowed to use PGD to help their son Zain, who has the blood condition beta thalassaemia.

1 August 2002 The HFEA refuses Michelle and Jayson Whitaker permission to create a baby that could save the life of their seriously ill son. The procedure would be ?unlawful and unethical?, says the HFEA, because tissue-type screening alone is not permitted in the UK.

21 July 2004. The HFEA announces it is extending the rules allowing embryos to be tested in order for families to have a child who could be a tissue match for a seriously ill brother or sister.

22 July 2004 The Secretary of State for Health, John Reid, announces that a new Regulatory Authority for Fertility and Tissue will be created to encompass the work of the Human Fertilisation and Embryology Authority and a new, proposed Human Tissue Authority.